Reader Interactions

NEWSLETTER

Comments

Hi. I’m on my first round of fertility help. I took metformin (rx from ob/gyn) for about a month before seeing a specialist. I hadn’t had a period in over two years, he gave me Provera to induce a period and then I took Clomid for five days and am now waiting to ovulate. My husband had a sperm analysis done and I had an HSG (an x-ray) to make sure my fallopian tubes are good to go. Everything there turned out good. Not surprisingly my ovaries had over 50 small follicles (very typical PCOS presentation). After the Clomid cycle I now have two very large follicles and a thick uterine lining. I’ve been in for ultrasounds and blood work 6 times in the past 12 days. Praying to ovulate and then get pregnant!

I Was diagnosed when I was 13. I am 41 and a new mother to a five-month-old boy. I tried everything, dieting, clomid, tracking with ovulation test. My husband and I had sex every three days for 21 years. None of it worked. I saved every penny I ever made until the only thing I spent money on was IVF. I tried 2 cycles of IVF. 8 eggs retrieved the first time. 4 were inserted. I didn’t get pregnet. We inserted the last 4 frozen embryos. I didn’t get pregnant. 6 eggs the second time. I didn’t get pregnant. We saved money again. I tried 2 more cycles of IVF. I didn’t get pregnant. I save money again. During the pre-IVF health checks they found in Endrometreal cancer and breast cancer caused by high levels of estrogen feeding cancer. The high levels of estrogen were due to the PCOS and I never even knew it was a risk I was taking. I still had my heart set on being a mother. I was 39. I found the cancer Doctor Who put me on medication to remove all traces of estrogen from my body. We starved the cancer of estrogen and it was gone. I had the cancer in my breast removed. Neither cancer came back for nine months. I was released to try to get pregnant. For the first time they put me on Metformin. The first round of IVF resulting in pregnancy that terminated after eight weeks. I told myself one last time if it doesn’t work, it was not work it was not meant to be. I continue to stay on the Metformin, but this time I insisted I be put on progesterone shots and vaginal progesterone, if I got pregnant. We inserted 4 embryos. I was pregnant. I started to bleed on the sixth week. It was heavy. I was sure I was losing the pregnancy. My fertility doctor did a ultrasound every week for 15 weeks. I originally was pregnant with twins and was losing one While keeping the other. I had a good second trimester with no problems, but the third trimester my cervix was dilating and I was put back on progesterone. I delivered 4 weeks early. My labor lasted two hours from the time I had my first contraction to when my son was born. We almost didn’t make it to the hospital. Looking back I have spent 21 years, $250,000 , more tears than I can count, more depression that I thought a strong woman could handle, had more embarrassing conversations then anyone should ever have and endured the advice so many people who didn’t know what the hell they were talking about. I have been told to give it up by friends, family , doctors, and even my husband . I am broke, I will never retire, when my son graduates from high school I will be 60 years old. None of that means anything as I sit here holding my miracle. My story will teach him what determination in your life can achieve. How if you really want something you will need to sacrifice, work hard, recognize your limit, endure hardships, put up with other people’s crap, and hold onto hope as long as you can.

Your question was how do I know when I’m ovulating? They do sell testers. They are expensive. They work based off of measuring your hormone levels. You pee on a stick every morning. If you have PCOS ovulation is only half the battle. The follicle also known as your cyst must burst at the right time to release the egg into the Fallopian tube. Normally your cyst( follicle )if you have PCOS will just continue to grow and grow and grow and even if it does burst the egg gets nowhere near the Fallopian tube. After using testers for four years and never seeing myself ovulate and the egg making it to the Fallopian tube I tell you to take it with a grain of salt. My best advice is get on Metformin, watch your carbs, and most important try to have sex every three days not more than three days because your husband sperm will be strongest at a three day interval. At the same time start saving money. Get a budget together that over a period of time gives you the ability to try IVF. I had very severe PCOS. I know women who did IVF one time and succeeded. Having PCOS is all about getting the eggs to develop and release. Insulin sensitivity makes it hard for the eggs to develop. Large cyst on the ovaries make it difficult for the egg to be released into the fallopian tube. IVF is focused on reteving mature eggs and getting strong embryos into the uterus. Progestone will help hold the pregnancy. It is important because PCOS interferes with hormones so badly that the embryo putting off it’s on hormones signal of progesterone may not be enough to prevent it The flushing of the pregnancy. Miscarriage comes with its own emotional baggage. If you do get pregnant on your own ask the doctor about putting you on progesterone. There are no risk with progesterone your embryos putting it out anyway. You’re just increasing the signal so nothing goes wrong. Be advise some doctors look down on this overuse of progesterone, but keep in mind they haven’t had to do what you have to do to get pregnant. With no risk to you or your child why would you do it.

I wish you luck. I tell you to never give up hope if it’s what you really want. I say having money is not worth not being a mother. I am broke. Hey cancer survivor. I am a mother. I am full of joy.

Hi Anonymous. Sorry for late reply.
After finishing breastfeeding for 6 mths my Gynecologic Oncology doctor put a hard choice on me. He wanted me to get a full hysterectomy immediately or if I wanted another child to immediately go through IVF again. He told me due to my previous history of endometrial cancer and my high estrogen levels I could not wait long to make the choice. I struggled with my choice and decide to risk cancer again now that I am a mother was irresponsible. I had my hysterectomy in October and am just now getting caught up on my to do list.

I want to start my answer with the basics.

Polycystic ovary syndrome (PCOS) is caused by hormonal imbalances that curtail or prevent ovulation—the body’s process of producing and releasing eggs from the ovary. Essentially, women with PCOS have an inappropriate production of follicle-stimulating hormone (FSH) and luteinizing hormone (LH) that results in limited egg development and an increase in testosterone and other typically male hormones (androgens). Women with PCOS also have abnormal insulin metabolism, which worsens with anovulation (no ovulation), increases androgens, and leads to obesity. Metformin has been proven to help with the insulin problems caused by these androgens and is helping PCOS women to ovulate.

Increased levels of estrogen are for typical is women with PCOS. Estrogen is a generic term for estrus-producing compounds; the female sex hormones, which include the following: ◾Estrone (E1)◾Estradiol (E2)◾Estriol (E3).

Estrogen is produced by the ovaries and in smaller amounts by the adrenal cortex (The outer segment of the adrenal gland located on top of each kidney) and fetoplacental unit (the fetus and the placenta).
During the menstrual cycle, estrogen acts to produce an environment suitable for fertilization, implantation, and nutrition of the early embryo.

Estrogen link to Breast cancer:
Estrogen stimulates some breast cancers to grow by triggering particular proteins (receptors) in the cancer cells. If breast cancer cells have estrogen receptors, the cancer is said to be ER positive. Hormone therapies that can stop estrogen from stimulating the cells to divide and grow are often successful for ER positive breast cancers. I had bad luck that I had PCOS and a ER positive breast cancer. I also see it as lucky because it is also has one of the highest successful treatment rates.

Estrogen link to Endometrial cancer:
Endometrial cancer is the most common uterine cancer. Increased levels of estrogen appear to play a role in the cause of endometrial cancer. Estrogen helps stimulate the buildup of the lining of the uterus. Studies have shown that high levels of estrogen result in excessive endometrial growth and cancer. 21 years of having sporadic menstruation was probably why I got Endometrial cancer. I hated taking birth control to trigger menstruation. I was trying to get pregnant for 21 years. I was taking 7 to 10 days of progestin to trigger my period every 3 mths, but when I turned 32 I got really depressed about all of my female problems and stopped going to the gynecologist. I didn’t go back until I was 39. In those 7 years I would have a 3 day period every 6 mths to 8 mths. It was my own irresponsibility of ensuring I was reducing the buildup of the lining in my uterus that probably caused my cancer.

Estrogen link to Ovarian cancer and Colorectal cancer:
Most studies agree hormone replacement therapy (HRT) with estrogen is the reason for increased cases of Ovarian cancer and Colorectal cancer. HRT is a and issue that is not associated with fertility, but is associated with metapause symptom control. Some think high levels of estrogen given during IVF might be and issue, but there are no studies to support this theory. I had IVF many times and was on high estrogen, but still feel it didn’t contribute to my breast or endometrial cancer.

Hope this helps you Anonymous. In the end you can’t stop breast cancer your risk is the same as women without PCOS. You can avoid the endometrial cancer by ensuring your reducing the buildup of the lining in your uterus every 3 mths. You can avoid Ovarian cancer and Colorectal cancer by not using hormone replacement therapy when you hit metapause.

I know it has been a while since this post, i just wanted to tell you thank you, your story touched me deeply and gave me motive to keep trying as after many rounds of clomid and gonadtropins and dissapointment i started to lose strength , Thank You

Hi Aimi,
Thank You for your reply!
I really want to encourage you to try metformin therapy with or without IVF. I also replied to the question about the risk of cancer with PCOS on Anonymous post and hope you will read this too! The biggest mistake I made was I got really depressed about all of my female problems and stopped going to the gynecologist. It was my own irresponsibility of ensuring I was reducing the buildup of the lining in my uterus that probably caused my endometrial cancer. When you feel disappointed and depressed ask yourself is the smallest chance of being a mother worth all of this? I always thought my calling in life was to be a mother. Now that I am looking back and asking myself, if it had not happened would I be the women I am today. I realize the journey of infertility was making be a better women. I gained an emotional maturity, patience, drive, enthusiasm, hopefulness and acceptance that I would not have found without the journey. I learned how to be so much more then women who had motherhood come to them easily. I could have lived life without being a mother. I would have always felt something huge was missing, but I would still found joy and peace in my efforts to not easily give up on my calling to be a Mom. Even if someone with PCOS who really feels the calling to be a mother doesn’t become a mother they have accomplished something few people will ever accomplish. They will have tried to overcome a difficulty that was not of their creation or within their control. They will have tried. Many men and women don’t try overcome bad odds because they feel they are entitled to their dreams, but we know a realized dream is a blessing! I wish you great success in overcoming that which is not within our control and no matter the outcome hope you find joy and peace in your life, it is a great gift.

Hi Chu,
Thank You for your reply!
I don’t know if you or someone you know has PCOS. Should you be facing the challenges that PCOS brings into our lives I recommend you read my reply on the cancer question. I love motherhood it is the most rewarding time in my life.

Krystal,
Your story is truly inspiring to me. I am 24 years old and me and my husbad want nothing more than to be parents. Your story brought a flood of tears to my eyes as I am having lots of problems dealing with the fact that I have to take metformin to even try to get pregnant. We tried for 2 years with out any help. Now we are trying with help. I get down in the dumps depressed and just want to give up. I was diagnosed at 15 by a doctor who told me you will never have children. I didn’t think anything of it them but now it saddens me that this is the first thing this doctor told me.
After reading your story and all you went through I know I can push on and loose this weight and keep trying. You are a wonderful woman and mother to share your story like this.
Women like me truly appreciate it!
Thank you

Hi there. My story is so similar to yours. I was diagnosed with PCOs shortly after getting married. Before that I had always had regular periods. Now I only get a period once in three months or so. My husband and I also really want to have children and I’m slowly falling into depression even though I try really hard to be positive. Like someone else on this thread mentioned I truly feel motherhood is my calling in life. And having to struggle for it is so so challenging. For now I’m just trying to lose weight as I haven’t been able to find a good gynecologist where I live. I’m traveling soon and hope to visit a gyno. Do you think I’ll be prescribed metmorfin? Just desperately want something to work. But it feels nice to know there are others facing the same situation.

Hey there!
I am currently 21 years old, I have been battleing PCOS and IC wihtout knowing for the last couple years. I was diagnosed this year with both after having a mirena put in and having pain to the point that my boyfriend had to carry me to bed. I thought for sure that the mirena was bursting through my ovaries as i have heard plenty of horror stories, I went into the doctor and demanded an ultrasound for them to find six cyst three on each ovary the size of dimes. I thought for sure i was being punished for something. I had just met my boyfriend two years ago and he was my first and will be my last partner. I had so many troubles with weight growing up and never really thought of anything besides me liking food too much and hating excersize. I never had regular periods and still dont, I’m currently on metformin and amytrypline (hope i spelled that right) for the pain and to shrink the cyst. I am just wondering if i should start trying to have kids now where it seems it takes women with pcos years to conceive? My boyfriend doesnt want kids at the moment and I’ve wanted to be a mom since i could talk. I’m from a large family and he is an only child. I feel as thought this may be the best age to start where the youger you are the more fertile you are, but i dont want my boyfriend to resent me for presurring him into having kids.

On a side note I am batteling depression and anxiety as well and am terrified to lose a baby and become more depressed. anyone have this issue as well?

I’m very excited to have found this group! After trying to conceive for 7 months i asked my Obgyn if there could be anything wrong with me… and as it turns out all signs point to PCOS! High AMH, insulin resistance, anovulation, and crazy hair loss. I’m glad to have an answer, but this start a whole new journey for me… My doctor started me on Metformin last week, but my questions is… will it really help me ovulate? I have always been quite thin, so weight isn’t an issue. I’ve started a low carb/sugar diet and run at least 2 miles per day. I’m just wondering if this is enough, or do i need to push for Clomid, or something more…? I’m 32 now. We’ve waited so long until “the time was right” to conceive and now this!!!!!!! And on top of that disappointment, my hair loss is getting quite noticeable. Feeling desperate 🙁

Hi Rose – Just came across your note and wanted to check in to see how you’re doing? My story, age, etc is almost identical to yours and I just started Metformin yesterday. I’ve apparently been battling PCOS for years but was just diagnosed this week. I’m 32, extremely healthy and an avid triathlete, so I’ve taken quite good care of myself throughout my life. Now I’m battling extreme pain, hair loss, very bad acne and all I want is to come out the other side and have a baby. Thanks to all of you for sharing your story; I’m surprised how hard it is to find out more about this unfortunate syndrome.

I see a lot of you ladies were diagnosed with high levels of estrogen. I on the other hand was diagnosed with very low levels and very high levels of testosterone. My testosterone should be at around 48% and I’m at 78%! Has anyone had any experience with this? If so, what did you do to lower it? I’m trying to get pregnant and I’m on day two of Provera and will start taking clomid on day 3 of my cycle. I tried metformin but I had terrible nausea and stomach problems so I had to stop. I’ve read that high levels of testosterone can cause autism to the child and this truly worries me. Any help and or suggestions would be greatly appreciated.

Just wanted to encourage each of you ladies. I was diagnosed several years ago with PCOS by a fertility doctor after experiencing infertility, hair loss, acne, etc as well as many cysts confirmed via imaging. The feeling of failure each month was so heavy; I know the pain of infertility very well. I am so grateful for message boards like this one that encouraged me so much. All glory to God, I now have 3 beautiful children. To those of you wondering – it is possible to have PCOS and have several children. There is hope. God is trustworthy in all things. He has a plan.

I was diagnosed with PCOS at 24 years old I am now 27 years old. I was put on metformin 500 mg and my periods were still irregular. I then was put on provera and clomid to start my cycle and ovulate. Still nothing. I switched my GYN. My new doctor put me on Metformin 2000 mg and told me I needed to lose 30 lbs. I have lost 25 lbs chnaged my diet and I now have normal periods. AS far as ovulating, I still dont think I am as OPK arent as accurate for women with PCOS. I follow my cycle using glow and FLo but I still have not conceived. Just hoping and praying for my blessing

I was diagnosed with PCOS about 5 years ago, we did 2 failed rounds of IVF at that time. Since Jan 1, I’ve taken prenatal, CoQ10, and fish oil. about 2 months ago an ultrasound showed no cysts at that time but had a 90 day cycle… I then took progesterone for 10 days… on 10 off 14 is what I’m supposed to do to regulate cycle… it’s been 10 days since last pill and have not gotten my period yet… is that normal? I thought period wasto come 7-10 days after last pill? TIA